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Living With Cerebella Ataxia

Hull Royal Infirmary. The View From the Patient Front Line

NHSSAVEI am disappointed that the NHS doesn’t offer, “Frequent Flier” points or at least a loyalty card system a la Tesco and the like. That way we would be packing our suitcases for Christmas in the Bahamas, or at the very least get some pennies of a few litres of diesel given my recent trips to Hull Royal Infirmary (HRI) run by the now Superman less Hull and East Yorkshire Hospitals Trust (HEY).

Here are some observations from the last few days and from two previous visits in August. The latter stays were far more stressful due to what was at stake but this time I had more opportunity to take things in.

I developed a nasty infection from a seemingly minor graze sustained from a fall (what age do you, “have a fall” as a pose to just plain, “falling over”?) on Sunday morning (26th October). I was more concerned about my ribs, knee and foot but being a Type 1 diabetic these cuts can become pesky. And how. By Friday my arm had the hue of a pink Christmas ham and hurt like billio. Plus overnight it had… (too much information!!! You may have just eaten after all).

 I went to Leeds as per for my Plasma Exchange whilst mulling over the best way to embarrass Graham Stuart later that day in an education debate organised by Emma Hardy and Julie Davies from the NUT. I need not have worried. Good old Graham did a fine job of this all by himself. In his world Zero Hours contracts and the Bedroom Tax present opportunities to get out of poverty. No, really.

Leeds took one look and said the anti biotic that I had been prescribed weren’t working. I needed to be admitted asap to get it sorted. Needless to say the consultant in Hull was unavailable and the registrar couldn’t arsed so it was left to my GP to sort it out. Luckily he’s a top banana and interested. Otherwise it would have been a trip to the Emergency Room at HRI. The idea was get the drugs needed into me as quickly as possible via a drip and whilst organising tests. The clock started on the process at 10am.

Any organisation is only as good as its weakest parts, and by golly the weakest part at HRI is shocker. The Acute Assessment Unit is notorious across the region and guaranteed to produce rolled eyes all round whenever the subject comes up.

From undiagnosed broken vertebrae to a legion of fairly major cock ups the AAU remains a disgrace. But when you are in a meeting with the CEO (long lamented Phil “Superman/ where’s my credit card? Morley) and he says everything is tickety boo and that our issues are, “anecdotal” and we are, “listening to malcontents, the wrong people” then you understand why the Care Quality Commission absolutely slaughtered the unit earlier this year. Check out saveournhshull.com for the full story. Morley concluded the August 2012 meeting with us by declaring that the best we could expect from the NHS in future was “Tesco Basic”, something that Andy Burnham described as, “chilling” when I related this prognosis during presentation last year.

The tactic at AAU appears to be one of grinding the patient down until they admit defeat and go home. Therein lays the rub. If we had any kind of Primary Care then most people wouldn’t need to be at HRI in the first place, and certainly not the AAU.

In my case they could have looked at my gammy arm and sent me home. Then the District Nurse (I know, stop laughing at the back; Nerys Hughes was not the only one) could have come in to set the drip off, come back in three hours and make sure all was well and repeat the process until the gunk had gone. If there were any issues we have these amazing new fangled inventions known as, “Mobile Telephones”. I’m not exactly sure how they work, but apparently you can ring people up when they aren’t in the office or at home. I know, totes amazeballs!

Instead I had to sit in extreme discomfort in a waiting room until a bed was found. The drip went in at 11pm by which time I was dizzy, nauseous and been without food since breakfast. I was too knackered to bother and just relieved not be sitting up and trying to hold my arm up whilst not irritating my damaged ribs.

Others were less lucky and gave up. We can ask why they were there in the first place, but that’s due to the fact that you can’t be ill other than between 7.30/ 11am and 2.30/6pm. And then you have to wait two weeks for an appointment by which time you are either better or a fortnight further into cancer or some such other debilitating disease.

Cuba, despite punitive and crippling sanctions has 24/7 GP cover and the best public health system in the world. It’s about priorities. GP’s need to be nationalised and work for us, not for profit. They have never been directly employed by the NHS and this needs addressing. Labour was forced to, “stuff their mouths with gold” in 1948 just to get them involved with the fledgling NHS in the first place. We were forced to do so again in 2004 and if you have the dosh to buy into a practice it’s trebles all round.

The personnel on AAU were clearly over stretched and under staffed which in turn led to less than what HEY may be aiming for in terms of staff interactions with each other and patients. When relaying information to individuals it would be better to do this away from the waiting room where, no matter how hard you try it’s impossible not to hear what’s said. I make no judgement on the staff here; it’s a bad culture at play.

The clue’s in the name: “Assessment” so it hard to fathom why people are left hanging about in the unit. If they can’t be moved to a Ward or sent home there should be a more appropriate, “holding” area rather than what we have at the moment. When there is overspill from the waiting room it’s a bit haphazard with people lying down or sitting in random places. The AAU must be the hospital’s priority going forward.

As to the Ward. I found it calm and purposeful, yet once again it was clear that there isn’t enough staff, especially qualified nurses. But it was good to see senior staff visible. I have been on Wards, especially in London where they spend all their time in offices or meetings. The affects are clear to see with morale and organisation of basic tasks not being up to scratch. Not so here.

My only major issue is the usual one. It is absolutely impossible to maintain blood sugar levels as all the meals are packed with hidden sugars such as in the sauces and bread used for sandwiches. This is universal and not just limited to HEY.

The practice of “healthy eating” seems to have escaped the notice of the NHS. Take carrots for example. The archetypal staple for the five a day requirement. In hospital food however they are inevitably of the sliced variety out of a can, and thus swimming in sugar based preservatives.

I have to admit that many staff could do with better training for dealing with dementia patients. Repeating the same thing but at higher volume and in the tone of a Reception Teacher isn’t the way forward. One incident reminded me of a classic Alas Smith and Jones sketch called, “News for the Elderly” (http://www.youtube.com/watch?v=Jj1W1r1V9TQ) . But once again funding will be an issue plus who covers fro said staff whilst they receive training.

I want to address a story from the Hull Daily Mail which appeared on Monday and soon had some of our local politicians lining up with the usual ill informed comments which are so behind the curve it’s frankly embarrassing.  http://www.hulldailymail.co.uk/Ambulances-turned-away-Hull-Royal-Infirmary-amid/story-24028179-detail/story.html

I spoke with a senior person during my stay. He (or she, anonymity has to be covered here) said that the story was, “bollocks”. This sort of thing is not abnormal as pressures build and was semi leaked to the Mail as the managers want a distraction from their lack of progress on the targets set by the CQC, especially err, bullying and the fact they have a self inflicted £13.7 million deficit which will require cash to be raised from private sources e.g. loans.  This is in addition to the phased in £100 million in cuts announced in June 2012 which our sole local elected representative that “gets” it, Karl Turner told the BBC would, “cause people to lose their lives”. The person finished by saying that the Tories want HEY and other Trusts to fail so that they can be sold off.

My scrape in August showed emergency care at its absolute best. As soon as it got life threatening nothing stood in the way of keeping me safe. The surgeon was amazing and the staff superb in all ways.

 The NHS IS world class. A number of influential reports said so this summer. http://www.theguardian.com/commentisfree/2014/jun/30/nhs-best-system-in-world-healthcare The care I receive in Leeds saves my life every week, and I watch in wonder as that machine eliminates the killer anti bodies and the staff ply me with tea as if is the most normal way to spend a Monday morning.

If we don’t fight we will lose it. The NHS faces extinction. Please help us get on the front foot and take the fight back into our communities. Join The People’s NHS Hull and Save Our Local NHS in a Mass Community March and Rally on Saturday 15th November, assemble outside the BBC Building in Queen’s Gardens at mid day.

 The March will be introduced by Richard Corbett MEP who will explain that TTIP is not a new tea bag, but a dangerous EU/ US Trade agreement that will kill the NHS right here, right now by introducing deregulation of contracts. I nicked the tea bag joke off Theresa Vaughan who, despite a personal tragedy is the main organiser.  

The FBU band will then lead us around Hull and back to the Rose Bowl. Community leaders such as Rosie Corrigan, and others will speak. The Rally is backed by UNITE, UNISON, GMB, PCS, the FBU, the TUC and the CWU Unions. Co Operative Party members form the Organising Committee and we have the backing of the Socialist Party, TUSC, Hull Red Labour Group and hopefully the main Hull, and East Riding Groups.

For more info visit: http://saveournhshull.wordpress.com/2014/10/20/stop-privatisation-and-ttip-mass-march-and-rally-sat-15th-nov/

If you have been, thank you for reading this.


About dermotrathbone

Writer and co author "Through Red Lenses". Activist Unite the Union, Save Our NHS Hull. Fan of Yorkshire County Cricket Club, Hull FC, Munster and Ireland Rugby. Views are mine alone and may not reflect the organisations concerned.


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